From Cheshire West & Chester Council, Young People and Consent Guidance Notes :

To be considered competent, a child should have:

• The ability to understand that there is a choice and that choices have consequences
• The ability to weigh the information and arrive at a decision
• To communicate that decision
• A willingness to make a choice (including the choice that someone else should make the
• decision)
• An understanding of the nature and purpose of the proposed intervention
• An understanding of the proposed intervention’s risks and side effects
• An understanding of the alternatives to the proposed intervention and the risks attached to them
• Freedom from undue pressure
• The ability to retain the information

 Cheshirewestandchester.gov.uk

Pocket book of primary health care for children and adolescents: guidelines for health promotion, disease prevention and management from the newborn period to adolescence. Copenhagen: WHO Regional Office for Europe; 2022. Licence: CC BY-NCSA 3.0 IGO. Page 666

For example, a child may wish to take part in a health survey or needs assessment, and the parents may disagree. In such circumstances, any reasons for parental reluctance should be explored and where possible, any unfounded fears met with reassurance where possible (for example about how information is used or how data is stored). However, when assessing ‘best interests’, health professionals also need to remain objective and open to the possibility that in some circumstances (for example, violence in the home), parents may seek to block their child from disclosing  concerns and  needs; in which case the child’s ‘best interests’ may lie in advocating internally for a way to enable this child to participate, assuming this is possible within the legal framework of the country. 

In primary health care, immunisation can also be a controversial issue within some families, and it is not uncommon for children or adolescents to want a vaccination and the parent be reluctant, for example for COVID-19 or for HPV. This can be a reflection of parent’s own concerns and sometimes be the result of misunderstanding or misinformation. 
Providing accurate and clear information about the purpose of the intervention is important and can be reassuring and helpful, ensuring that this is objective and not directive. Similarly, explaining to parents about the rights that their child has and why these are important can be helpful, as parents are sometimes not aware of these or may be sceptical. 
Sometimes, moral, religious or cultural beliefs contribute to conflict around medical decisions. Such concerns should be identified and addressed in a respectful manner as early as possible and discussions should be truthful and transparent, always assuming that the primary focus of decision-making remains the child patient’s best interests. Getting the support and mediation of a trusted religious or community leader where available, can be helpful. 

Such as procedures to insert an intravenous cannula to give medicines to treat a serious infection or take blood for an important test, it is not uncommon for children to initially refuse or not to want this, particularly being young.
In such circumstances, the conclusion may be non-negotiable and that it is in the child’s best interests to have the treatment. However, this should be explained kindly and carefully to the child concerned, and the child concerned should still be given choices that enable some sense of control and influence on other elements of the care provided, such as sitting position, which arm/hand is used, etc. It is also important to choose the least intrusive treatments possible and to seek alternatives that would be acceptable to the child.
 

These typically occur with young children requiring urgent care, as described in the paragraphs above, and sometimes in complex mental health care settings. Situations like these often create ethical conflicts for health professionals and challenge the application of children’s rights. Physical holding should only occur when there is serious risk to the child’s health if the intervention is not performed, if proactive and preventive strategies have been exhausted. The legal guardians would as a main rule need to approve of the action. The action must be justified and proportionate to the health risk one is seeking to mitigate, and there are legal requirements for this that will vary between member states. All efforts should in any case be made to reduce the level and intensity of this situation and the degree of force should be confined to only what is necessary to hold the child for the shortest amount of time whilst minimising injury to all involved.  Decisions to use any form of restrictive physical intervention must be based on the assessment that no other method is available and that its use will cause less harm than not intervening. Even if the necessity has been explained before the intervention, it should always be followed by a discussion where the professional explains why this has been necessary and the child should be given an opportunity to debrief, including emotionally. 

For example if an adolescent seeks advice or health care in relation to concerns about a sexually transmitted disease and does not wish to tell their parents. The child's right to confidentiality and access to counselling is important and should be respected. In such circumstances, health professionals may encourage children to open up to their parent(s) and offer support and mediation between the child and the parent(s) if necessary. 

In parallel, health professionals also have a duty to assess the circumstances to consider if the child is in an abusive situation and needs protection, or if the child's mental and physical wellbeing is at risk. These and other factors need to be balanced by health professionals in determining the 'best interests' of the child and whether parents should be informed.

For example, disagreements between children and parents or health professionals about whether to continue active treatment or interventions when there is little hope of recovery (maybe in the case of continuing treatment for cancer, after previous treatments have failed). 

In such cases proposed intervention should be delayed while an attempt at resolution is made. Such situations are always very emotive and health professionals should be compassionate but objective in supporting every effort to understand and respect differences of opinion between the children and their parents/legally designated representative. Objections from children, capable of forming an opinion, should be advocated for and respected; and the opinion of legal representatives should be taken into account in interpreting the wishes of children.

2-4-Refusal of care expressed by the minor

The minor's participation in the decision and the collection of his or her point of view cannot take precedence over the decision of the holders of parental authority.

Minors may not refuse hospitalisation.

When a minor expresses a refusal out of weariness, fear of pain or even in the event of irreversible consequences, appropriate dialogue will be required. The medical team, in conjunction with the family, should try to convince the minor.

When the medical acts performed on the minor are not necessary for his or her health, the child has a right of veto prohibiting the holders of parental authority from imposing the act in question. This applies to bone marrow collection for the benefit of a family member or participation in biomedical research.

2-5-Refusal of care expressed by one or more holders of parental authority

It may happen that the parents or legal representatives of minors object to treatment or surgery being carried out or that they decide to take the child out of the health establishment against the advice of the doctors.

The question is to what extent hospital staff can intervene to protect the child against the parents' wishes.

The law states that the doctor must respect the parents' wishes after having informed them of the consequences of their choice.

When the health or physical integrity of the minor is in danger of being compromised by the refusal of the minor's legal representative or the impossibility of obtaining the latter's consent, the doctor must inform the doctor in charge of the service who may refer the matter to the public prosecutor in order to initiate educational assistance measures enabling him or her to provide the necessary care.

In the event of extreme urgency, the law requires the doctor to provide essential care, i.e. that which will protect the young patient from serious consequences for his health. In this case, the doctor will decide to intervene after consulting another doctor and will then draw up a certificate of the urgency of the situation, without waiting for an educational assistance measure from the public prosecutor.

In the absence of an emergency, if the parents or legal representative refuse to sign the authorisation for care or if their consent cannot be obtained, no act of care can be carried out, they must sign a certificate of refusal of care. The parents may avail themselves of the provisions of the Public Health Code when the care does not significantly affect the minor's state of health or if the abstention from care is in keeping with the family's cultural background and its own health beliefs.

If there is no emergency but the medical or surgical procedure is essential, the doctor must inform the director who will alert the public prosecutor so that an educational assistance measure can be taken. The duty public prosecutor should be contacted.

• The doctor should mention in the medical file the need for the treatment, the proportionality of the procedure, the impossibility of obtaining the agreement of the holders of parental authority and the means used to change their minds.
• The decision to operate must be signed by the doctor and co-signed by a representative of the hospital administration or by a doctor with no hierarchical link (check feasibility)

2-6-The case of refusal of blood transfusion

In case of emergency, the parents must be informed of the risk to the child if he/she is not transfused.

If the opposition persists, an educational assistance procedure must be initiated by the public prosecutor's office to lift parental authority.

The doctor then takes the decision to transfuse the child because of the urgency of the situation. If the blood transfusion is not essential for the child's survival and the parents or legal representative refuse it, they must sign a certificate of refusal of care.

Source: Fiche n°3: Information et consentement aux soins d’un mineur - Direction générale de l'offre de soins (DGOS) -ONVS Observatoire nationale des violences en milieu de santé

 Refusal of care expressed by the minor (section 2-4) – Guidance by the Ministry of Health (France)

In 2016, the Ospedale Pediatrico Bambino Gesu’(Rome) set up a Bioethics Function, a Clinical Ethics Service and in 2021 it established a Clinical Ethics Committee with the aim of providing advice and specialist training in Clinical Ethics for children.

The purpose of Clinical Ethics consultancy is to identify, analyse and propose solutions to ethical problems and conflicts that arise in patient care. 
https://www.ospedalebambinogesu.it/etica-clinica-in-pediatria-89876/

There were 12 cases involving children brought to the attention of the Committee in 202, 15 cases in 2022, and 11 cases between January and July 2023. The numbers include all the ethical consultancy of Bioethics Resource some of which were discussed and evaluated together with the Committee.

Clinical cases are analyzed using four criteria: 1. Indications for medical intervention: what is the medical problem and how can it be solved; 2. Patient preferences: what the parents want and, when the child can express himself, what the patient prefers; 3. Quality of life: compared to the present conditions, how can the future life of the patient be improved; 4. Contextual aspects: for example the needs of siblings, closeness or distance from the hospital, economic or social problems.

The main and frequent ethical questions raised to the Bioethics Resource and to the Committee of Ethics concerns therapeutic obstinacy. Above all in paediatrics, clinical persistence and experimental obstinacy are often practiced because almost instinctively, even at the request of parents (due to understandable emotional feelings), the physician is inclined to do as the parents wish and do everything possible (both pharmacologically and technologically) to preserve the child’s life, without considering the negative effects in terms of outcomes and further pain and suffering. Sometimes, clinical persistence is consciously practiced as a defence against any possible accusations of failure to provide medical assistance or active interruption of care or life-sustaining treatments (the so called ‘defensive medicine’). In the majority of cases, clinical persistence is accompanied by the use of often sophisticated technologies. For this reason, the term "clinical persistence" is also associated with "technological obstinacy". Issues involving clinical persistence in paediatrics need to be addressed on a case by case analysis which takes into account the specific circumstances prevailing in the different concrete realities:  An increase of these situations is foreseeable in paediatrics environment given the rapid developments in science and technology.

The main ‘lessons learnt’ in the Committee in this context are the following:

In the first place, the need for the identification of clinical obstinacy through scientific and medical elements that describe the patient's clinical condition, as in paediatrics the subjective elements that refer to the patient's experience are often lacking. In the case of children, there is a lack of a sufficiently conscious participation in the choice, as they may not be able to express themselves because of their age or immaturity, or in any case be in a condition incompatible with autonomy or full awareness. The description of the clinical condition is necessary in order to justify a possible gradual suspension of an ongoing medical treatment in children with a negative prognosis and in conditions of limited life expectancy, excluding any reasonable possibility of recovery and improvement of the clinical conditions, but only increasing the pain and suffering of the child. The reality is often even more complex: some children do not have a diagnosis (as, for example, is the  case  with rare diseases); others have a diagnosis but not a prognosis. It should always be considered that  in children the unpredictability of the evolution of the clinical framework calls for  special attention in careful consideration of each term used  ; even the reference to "incurability" is dynamic, revisable in relation to the evaluation moment by moment of the evolution of the pathology, of the rapid progress of medical science; even more so with the expressions 'terminality' or 'imminence of death' which are temporally and clinically vague given the prognostic difficulty. And even pain and suffering are not easily detectable and still difficult to measure above all in children. The best interest of the child should be the inspiring criterion in the situation and should be defined starting from the contingent clinical condition. Doctors should avoid implementing ineffective and disproportionate clinical pathways only in order to comply with parental requests and/or to meet defensive medicine criteria. The Committee helps doctors and parents (often through hearings and direct dialogue during meetings) to base their reflection on the best interest of the child.

A second important element is communication. The decision of the medical team should necessarily be made by involving the parents in the cure and care of the children, devoting particular attention to the empathic understanding of the dramatic situation that the parents are facing and guaranteeing them time and space in communication. Information to parents should be provided by a multi-specialist medical team, of variable composition in relation to the typology of the child's illness, the examination of the possible clinical implications associated with it, the risks and benefits of treatments and their burden. It should be kept in mind that the information cannot always have clear and definitive contents, given the complexity, uncertainty and unpredictability of the condition. However, the information should be continuous for the duration of the entire therapeutic process, also through the elaboration of shared treatment plans or decisions, according to the evolution of the child's conditions in the context of a care relationship, which contributes to the construction of a climate of trust between doctors and family. Often in the process psychologists need to be involved to support  both the parents and the children. The quality of life of both the children and parents should be considered,  as well as the context (cultural, socio-demographic conditions).

A third element is the need to implement the training of doctor and healthcare personnel, to create a core group of professionals (together with social workers, psychologists, bioethics experts, family associations) able to support parents on an emotional and practical level and accompany them in the difficult path given by the conditions of illness and vulnerability of the child in extremely precarious clinical conditions. There should also be recognition of the important role of the Associations of the parents of sick children in order to consolidate the networks for joint support from parents and from society itself.